Crochet, Kidney Disease, and Candor

Monthly Archives: May 2012

To those who have sent me messages or been worried about me because I haven’t posted for a while, I’m sorry. I was working on Kohl’s film, which he shot this month (http://www.facebook.com/OrcWars), and it devoured our lives for weeks. I actually did much better on the shoot than I thought I would; it just shows that when something needs to get done, we can find a way to do it, in spite of health or energy. I ended up being fully capable of running around and working all day. Well, maybe not fully capable, but for the most part, I got the job done. Once I get some of the pictures from the shoot, I’ll write a post about it, but today I have other things I’m thinking about.

I met with my surgeon, and a lot of my fears about being able to do peritoneal dialysis have come rushing back. He had some concerns about not only placing the catheter, but also about whether it would work after so many surgeries and so much scar tissue. There’s no real way to tell until they try to place it, so the surgery is going ahead on June 12, but in my mind it has gone from being a fairly routine procedure to one that will decide the course of my health for the foreseeable future. I’m not sure I’m up to being on hemodialysis full time. The last time I did it, my body told me it hated me every other day and my eyes quit working. I wasn’t well enough to do more than move from one supine position to another, and the only things that even tasted good to me were the fumes from the saline solution they would put in my shoulder catheter. It wasn’t much of a life.

These renewed fears have fed into my recent behavior, which hasn’t made Kohl too happy. The way I deal with hurtful things is to shut down and just think them through. The bigger the problem, the quieter I get and the longer I stay silent. The end of Kohl’s film was a signal to me that it was time for me to let go of this magical health hiatus I’ve been living and actually commit to the dialysis process. Every part of my thinking soul is rebelling against the simple fact that it is time. My mind is scrambling like a rodent in a plastic bucket, trying desperately to find a way out, but my body is telling me, with the solidity of stone, that it’s over, and I’m here. I’m at the point where I have to reconcile what is with the ghost of what I wanted to be, and it’s taking me a long time to let go.

I want to be able to walk up my stairs without taking a ten minute rest afterwards. I want to be able to go to sleep at night without making sure my room is sterile so that I can hook up to a machine. I want to smell like the blend of Dove soap, Vaseline Intensive Care Lotion, and Burt’s Bees with my skin instead of chemicals. I want to go outside in the middle of a summer day without shivering. I want to eat French fries without worrying about which strength of dialysis solution I should use to remove the water they’ll make me retain. I want the energy to help Kohl with his projects. I want to be able to keep my house clean and organized. I want a baby. Good heavens, how I want a baby. I want my life, the one I have worked for years to build, the one that I keep having to give up while I wait for my body to be up to the challenge.

Right now, though, what I need is to accept what is happening. I need to let Kohl into my thoughts and allow him to support me. I need to focus on living with grace and strength, despite the very real anger and sorrow that I often feel. I need to refocus on the many others around me who can use my help. It’s too easy to become self-centered when going through difficulties. The fight for survival encourages selfishness, but I want to be the kind of person who thinks of herself last, and I have so far to go. I need to take every opportunity to make myself more loving, more in tune with others’ needs, more aware of how to be better. In that way, I think what I probably need most is this kidney disease. (I know you can’t hear my sigh of resignation through the computer, but it came right after that last sentence.)

I also need help. As I go into this surgery, would you keep me in your thoughts and prayers? I want so badly to be able to do peritoneal dialysis, so, if you would, could you bend your energies in that direction when you get a chance? I’ll let you know how it turns out.

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I’m a border girl, linguist, avid reader, devoted crocheter, ghostwriter, two-time kidney transplant recipient, former blind person, new mother, and wife of a filmmaker. I believe with all my heart that happiness is a choice and strength is a habit, and sometimes I am actually able to put that philosophy into action. I want to be better than I am, and the only way I can think of to do that is to look for the beauty and delight that my difficulties throw into sharp relief.

Silver

I had stopped writing
and seldom sang
Magic had withdrawn, or been disguised
by hard gray facts
and bleak procedures
I was alone
darkened
all the silver
in my soul
had been washed out
by machine
leaving only the taste of cold metallic water
and all I knew anymore
was how to be realistic and tired
It was a remembrance
of when I could hear fables in the wind
and would sleep bathed in white moonlight
like a film of beauty on my skin,
that awoke me
Tubes and fluids and dullness of soul
are not me
I hold an argent laugh in my throat
and that is no ordinary thing.